OMNI-corner: Patient Information on the Web – Doctor on Your Desktop?
I’m an E.R. fan, you’re an E.R. fan and official figures indicate we’re not alone. There’s plenty of choice these days if your taste in entertainment is medical. Millions of us eavesdrop on the physician/patient relationship every week, both the medical ones and otherwise. Sometimes it is a lot more interesting than real life. However, when it comes to being sick, most of us would agree, you can’t beat a bone-fide, qualified medic. We wouldn’t take advice from Dr. Green, charming though he is, because, well, he’s not a real doctor, obviously. And television is no different from any other communication medium, right?
Not, it seems, if you’re talking about the Internet. In the September issue of Medicine on the Net, a physician criticised the HealthFront site for its advice on sore throats, which recommends use of the pain reliever Advil. See
for the article and
for the Advil web site.
“No word about the possibility that strep A could be the cause…….and, if untreated could lead to cardiac and renal disease.”
The article suggested that the presentation of information in this way bordered on “practicing without a license”.
This is, of course, not an isolated example, but the use of the Internet for advertising is not the only method by which medical advice is published. Many well meaning sites offering responsible information don’t make it clear where the medical content comes from, many carry no “health warning” to advise surfers not to use the information they offer as a substitute for a visit to their doctor, and information compiled by patients from their own experience can be presented as the official word. It is now even possible to consult with a psychiatrist on the Internet even though the psychiatrist involves states clearly “At this time I do not believe that it is possible to do psychotherapy over the internet”. This apparently does not prevent people being charged for the e-mail consultation offered!
Why should medicine on the Internet be any different? Why do people flock to medical sites produced by faceless individuals and institutions with no obvious medical qualifications or affiliations? Why do sufferers post their symptoms to sci.med newsgroups - and do they pay attention to the replies they’re given? Can the Internet deliver anything of real worth for patients?
The first two questions require an insight into the human psyche which, thankfully, is beyond the scope of this column. The third can be answered with a “Yes”, albeit a qualified one. There is useful information on the Internet for patients, but as always, you have to know what you’re looking for, keep a thought for who you trust to provide it and, most importantly, know when the medium has reached its limitations.
Leading the field are the various agencies and institutes of the Department of Health and Human Services of the USA, which includes the National Institutes of Health, the FDA (Food and Drug Administration) and the Agency for Health Care Policy Research (AHCPR). Indeed, the quantity of information available and the size and complexity of the Department have made a focal point for consumer related information necessary, complete with a browsable subject classification and descriptions of each resource.
Professional associations are a good source, for example see the American Association of Family Physicians online information service, or the American Academy of Dermatology’s series of pamphlets
Individual institutions also contribute, sometimes in one particular area of expertise, for example, the Beth Israel Medical Center, New York has an extensive collection of breast cancer documents for patients (to supplement their Breast Cancer Program).
Access to printed material is also enhanced by the American Academy of Family Physicians’ HEP (Health Education Program) service - a searchable database of all the AAFP’s printed material.
The U.S. is clearly well served, a variety of publishers (government, academic, professional) and the depth of provision is impressive. Where does that leave us in the UK? Lagging behind our colleagues across the pond as usual? Not at all; although use of the Internet to deliver consumer health information is not commonplace at the present time, it would seem we are on the verge of becoming extremely well provided for.
The Help for Health Trust recently added to its web site a list of WWW services it uses, alongside more traditional methods, to answer real telephone queries from the public to its Health Information Service Hotline.
There are already a few excellent resources online, provided by a variety of institutions, from the selection provided at the Department of Health (for example this advice for elderly people moving into care homes) to community information projects such as Libra (public information on substance abuse in Oxford).
What of those who have a responsibility to supply information to the public? The picture here is promising too: the Health Education Authority has stuck a first, tentative toe in the water although their WWW site seems to be in testing at the moment. Meanwhile, north of the border, the Health Education Board for Scotland will be launching a content-rich site in November, which I have seen previewed and promises to be a fine resource.
These are exciting developments, and of course you can rely on OMNI to cover the whole picture. OMNI (Organising Medical Networked Information) is eLib’s subject based information gateway in biomedicine, covering a wide range of topics from cytology to psychology and from proteins to practice guidelines.
Consumer health information is clearly a challenging field for the Project. First impressions suggest that there’s a great deal of it (perhaps too much for us to cover). However, as soon as a few basic quality criteria are applied to the problem, the field narrows considerably. Before being added to OMNI, each resource is assessed for:
- audience level
- who the resource is aimed at?
- who is responsible for the resource (publisher or author)?
- is the resource well established? is there adequate version control, archiving etc?
- is the resource up to date?
- are there restrictions on access to the resource?
OMNI does not include patient orientated material which
- is based purely around personal patient experience
- is unattributable
- is not published by a trusted information provider
- is advertising a particular company or product
To see what patient-orientated material we’ve evaluated so far, try searching OMNI for “patient education”. We welcome suggestions for new resources, please contact me personally or visit the OMNI home page.
An active approach is also being taken by the Health on the Net Foundation (based in Geneva). They are asking sites providing medical information to sign up to a code of conduct, which includes assurances that medical advice will be given by trained professionals and requires balanced views of any particular product or treatment. Sites which claim to conform to the code may display the HON logo on their pages. The scheme’s weakness is that it will not be policed by the HON Foundation; they will rely on the honesty of webmasters and the vigilance of the public to identify incorrect or inappropriate use of their quality mark.
A pattern (I hope) is emerging. We don’t trust just anyone to provide health information off the Web - we should be just as choosy on the Web, and encourage the same spirit of healthy scepticism in our users. It is quite critical to be able to attribute the source of any information used, and that the information is not used as a substitute for consultation with a medical professional. It is also essential that those with a responsibility to inform patients make their presence felt in this arena. In the meantime, the US scene has both some examples to follow, and several to be avoided.
Mark Selby, from the Health on the Net Foundation, responds to the above article.
Regarding your article on the HON Code of Conduct, I want you to be aware that Health On the Net Foundation is indeed policing the use of the Code and has already sent warnings to several Websites re improper use of the HONcode logo.
Each day we monitor the Web for all sites displaying the logo and review these on a regular basis. This is a very time- consuming exercise but we believe it is essential if the quality of medical information on the Net is to be improved.
- The HONcode is designed to be dynamic and the principles of the code are continually being reviewed. Health On the Net Foundation welcomes suggestions and ideas from your readers and any modifications will be agreed with sites displaying the HONcode logo before they are adopted.